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1.
Lancet Healthy Longev ; 5(5): e370-e378, 2024 May.
Article in English | MEDLINE | ID: mdl-38608695

ABSTRACT

Advance care planning (ACP) is increasingly recognised in the global agenda for dementia care. The European Association for Palliative Care (EAPC) Taskforce on ACP in Dementia aimed to provide recommendations for policy initiatives and future research. We conducted a four-round Delphi study with a 33-country panel of 107 experts between September, 2021, and June, 2022, that was approved by the EAPC Board. Consensus was achieved on 11 recommendations concerning the regulation of advance directives, equity of access, and dementia-inclusive approaches and conversations to express patients' values. Identified research gaps included the need for an evidence-based dementia-specific practice model that optimises engagement and communication with people with fluctuating and impaired capacity and their families to support decision making, while also empowering people to adjust their decisions if their goals or preferences change over time. Policy gaps included insufficient health services frameworks for dementia-inclusive practice. The results highlight the need for more evidence and policy development that support inclusive ACP practice models.


Subject(s)
Advance Care Planning , Consensus , Delphi Technique , Dementia , Palliative Care , Humans , Advance Care Planning/organization & administration , Advance Directives , Dementia/therapy , Europe , Health Policy
2.
Palliat Med ; 38(3): 297-309, 2024 Mar.
Article in English | MEDLINE | ID: mdl-38372020

ABSTRACT

BACKGROUND: Burns are a global public health problem, accounting for around 300,000 deaths annually. Burns have significant consequences for patients, families, healthcare teams and systems. Evidence suggests that the integration of palliative care in burn intensive care units improves patients' comfort, decision-making processes and family care. Research is needed on how to optimise palliative care referrals. AIM: To identify triggers for palliative care referral in critically burned patients based on professionals' views, experiences and practices. DESIGN: Qualitative study using in-depth interviews. SETTING/PARTICIPANTS: All five Burn Intensive Care Units reference centres across Portugal were invited; three participated. Inclusion criteria: Professionals with experience/working in these settings. A total of 15 professionals (12 nurses and 3 physicians) participated. Reflexive thematic analysis was performed. RESULTS: Three main triggers for palliative care referral were identified: (i) Burn severity and extension, (ii) Co-morbidities and (iii) Multiorgan failure. Other triggers were also generated: (i) Rehabilitative palliative care related to patients' suffering and changes in body image, (ii) Family suffering and/or dysfunctional and complex family processes, (iii) Long stay in the burn intensive care unit and (iv) Uncontrolled pain. CONCLUSIONS: This study identifies triggers for palliative care in burn intensive care units based on professionals' views, clinical experiences and practices. The systematisation and use of triggers could help streamline referral pathways and strengthen the integration of palliative care in burn intensive care units. Research is needed on the use of these triggers in clinical practice to enhance decision-making processes, early and high-quality integrated palliative care and proportionate patient and family centred care.


Subject(s)
Intensive Care Units , Palliative Care , Humans , Palliative Care/methods , Qualitative Research , Referral and Consultation , Delivery of Health Care
3.
BMC Med Ethics ; 25(1): 23, 2024 02 27.
Article in English | MEDLINE | ID: mdl-38413954

ABSTRACT

BACKGROUND: The expressions of a "wish to hasten death" or "wish to die" raise ethical concerns and challenges. These expressions are related to ethical principles intertwined within the field of medical ethics, particularly in end-of-life care. Although some reviews were conducted about this topic, none of them provides an in-depth analysis of the meanings behind the "wish to hasten death/die" based specifically on the ethical principles of autonomy, dignity, and vulnerability. The aim of this review is to understand if and how the meanings behind the "wish to hasten death/die" relate to and are interpreted in light of ethical principles in palliative care. METHODS: We conducted a meta-ethnographic review according to the PRISMA guidelines and aligned with Noblit and Hare's framework. Searches were performed in three databases, Web of Science, PubMed, CINAHL, with no time restrictions. Original qualitative studies exploring the meanings given by patients, family caregivers and healthcare professionals in any context of palliative and end-of-life care were included. A narrative synthesis was undertaken. PROSPERO registration CRD42023360330. RESULTS: Out of 893 retrieved articles, 26 were included in the analysis, accounting for the meanings of a total of 2,398 participants. Several factors and meanings associated with the "wish to hasten death" and/or "wish to die" were identified and are mainly of a psychosocial and spiritual nature. The ethical principles of autonomy and dignity were the ones mostly associated with the "wish to hasten death". Ethical principles were essentially inferred from the content of included articles, although not explicitly stated as bioethical principles. CONCLUSIONS: This meta-ethnographic review shows a reduced number of qualitative studies on the "wish to hasten death" and/or "wish to die" explicitly stating ethical principles. This suggests a lack of bioethical reflection and reasoning in the empirical end-of-life literature and a lack of embedded ethics in clinical practice. There is a need for healthcare professionals to address these topics compassionately and ethically, taking into account the unique perspectives of patients and family members. More qualitative studies on the meanings behind a wish to hasten death, their ethical contours, ethical reasoning, and implications for clinical practice are needed.


Subject(s)
Terminal Care , Terminally Ill , Humans , Attitude to Death , Palliative Care , Terminally Ill/psychology
4.
Palliat Med ; 38(1): 57-68, 2024 Jan.
Article in English | MEDLINE | ID: mdl-38054428

ABSTRACT

BACKGROUND: People with Parkinson's disease has significant and increasing physical, psychosocial and spiritual needs, as well as problems with coordination and continuity of care. Despite the benefits that palliative care could offer, there is no consensus on how it should be delivered. AIM: The aim of this study is to provide a pragmatic overview of the evidence to make clinical recommendations to improve palliative care for people with Parkinson's disease and their caregivers. DESIGN: A systematic review method was adopted to determine the strength of evidence, supported by feedback from an expert panel, to generate the 'do', 'do not do' and 'do not know' recommendations for palliative care. DATA SOURCES: Searches were conducted via OVID to access CINAHL, MEDLINE, EMBASE and the Cochrane Library from 01/01/2006 to 31/05/2021. An additional search was conducted in December 2022. The search was limited to articles that included empirical studies of approaches to enabling palliative care. RESULTS: A total of 62 studies met inclusion criteria. There is evidence that education about palliative care and movement disorders is essential. palliative care should be multi-disciplinary, individualised and coordinated. Proactive involvement and support of caregivers throughout the illness is recommended. Limited data provide referral indicators for palliative care integration. Discussions about advance care planning should be held early. CONCLUSIONS: Consideration of palliative care integration based on symptom burden and personal preferences, coordination and continuity of care are needed to maintain the quality of life of people with Parkinson's disease and their caregivers.


Subject(s)
Advance Care Planning , Parkinson Disease , Humans , Palliative Care/psychology , Parkinson Disease/therapy , Parkinson Disease/psychology , Caregivers/psychology , Quality of Life
6.
Alzheimers Dement ; 20(2): 1309-1320, 2024 Feb.
Article in English | MEDLINE | ID: mdl-37985444

ABSTRACT

INTRODUCTION: Existing advance care planning (ACP) definitional frameworks apply to individuals with decision-making capacity. We aimed to conceptualize ACP for dementia in terms of its definition and issues that deserve particular attention. METHODS: Delphi study with phases: (A) adaptation of a generic ACP framework by a task force of the European Association for Palliative Care (EAPC); (B) four online surveys by 107 experts from 33 countries, September 2021 to June 2022; (C) approval by the EAPC board. RESULTS: ACP in dementia was defined as a communication process adapted to the person's capacity, which includes, and is continued with, family if available. We identified pragmatic boundaries regarding participation and time (i.e., current or end-of-life care). Three interrelated issues that deserve particular attention were capacity, family, and engagement and communication. DISCUSSION: A communication and relationship-centered definitional framework of ACP in dementia evolved through international consensus supporting inclusiveness of persons with dementia and their family. HIGHLIGHTS: This article offers a consensus definitional framework of advance care planning in dementia. The definition covers all stages of capacity and includes family caregivers. Particularly important are (1) capacity, (2) family, (3) engagement, and communication. Fluctuating capacity was visualized in relation to roles and engaging stakeholders.


Subject(s)
Advance Care Planning , Dementia , Terminal Care , Humans , Consensus , Delphi Technique , Dementia/therapy
8.
Palliat Med ; 35(1): 130-141, 2021 01.
Article in English | MEDLINE | ID: mdl-32912033

ABSTRACT

BACKGROUND: Nurses are the largest regulated group of healthcare professionals involved in palliative care. In 2004, a taskforce of the European Association for Palliative Care (EAPC) launched the 'Guide for development of palliative nurse education in Europe' (hereinafter, the EAPC 2004 Guide). No systematic evaluation of its impact in the development of palliative care education was undertaken. AIMS: To describe current undergraduate and postgraduate nursing education across Europe; to identify the roles that nurses with different palliative care educational levels have in palliative care; and to assess the uptake of the EAPC 2004 Guide in the development of palliative care nursing in Europe. DESIGN: Descriptive research involving an online survey among nursing experts, and the consultation of national representatives. SETTING/PARTICIPANTS: A total of 135 nurses (52% response rate) from 25 countries completed the online survey; representatives from 16 countries were consulted. RESULTS: In 14 (56%) countries, palliative care was not identified as a mandatory subject within undergraduate nursing education. The EAPC 2004 Guide is widely known and was/is being used in many countries to promote palliative care nursing education. Large variations were found across and within country responses. CONCLUSIONS: Palliative care nursing education varies largely in Europe. The wide awareness and use of the EAPC 2004 Guide show how policy measures can influence the development of palliative care education. Recommendations are built and focus on both fostering the use of this guide and implementing policy measures to ensure that palliative care nursing is recognised and certified as a specialty in all European countries.


Subject(s)
Education, Nursing, Baccalaureate , Education, Nursing , Hospice and Palliative Care Nursing , Students, Nursing , Europe , Humans , Palliative Care
9.
Palliat Med ; 34(7): 851-870, 2020 07.
Article in English | MEDLINE | ID: mdl-32452294

ABSTRACT

BACKGROUND: Palliative care exists in diverse healthcare settings. Nurses play a crucial role in its provision. Different levels of palliative care provision and education have been recognized in the literature. Therefore, nurses need a set of various competencies to provide high-quality palliative care. AIMS: To systematically synthesize the empirical evidence of (1) nursing competencies needed in palliative care and (2) whether these competencies differ across the level of palliative care. DESIGN: Systematic integrative review with thematic synthesis. Prospero: CRD42018114869. DATA SOURCES: CINAHL, PubMed, Academic Search Premier, Scopus and Medic databases. Studies on nursing competencies linked to palliative care reported in English, Swedish, Finnish, Spanish, Portuguese or German were considered. Search terms: 'palliative care or hospice care or end-of-life care', 'competency or professional competence or skills' and 'nursing'. Articles were independently screened and reviewed by two researchers. Quality appraisal was conducted following Hawker's criteria. RESULTS: A total of 7454 articles were retrieved, 21 articles were included in the analysis. Six diverse nursing competencies dimensions, namely leadership, communication, collaboration, clinical, ethico-legal and psycho-social and spiritual were identified. The reports rarely defined the level of palliative care and covered a wide array of healthcare settings. CONCLUSION: Nurses need a wide range of competencies to provide quality palliative care. Few studies focused on which competencies are relevant to a specific level of palliative care. Further research is needed to systematize the nursing competencies and define which nursing competencies are central for different levels of palliative care to enhance palliative care development, education and practice.


Subject(s)
Hospice Care , Terminal Care , Clinical Competence , Humans , Leadership , Palliative Care
10.
Palliat Med ; 33(10): 1241-1254, 2019 12.
Article in English | MEDLINE | ID: mdl-31296110

ABSTRACT

BACKGROUND: Burn units are intensive care facilities specialized in the treatment of patients with severe burns. As burn injuries have a major impact in physical, psychosocial, and spiritual health, palliative care can be a strengthening component of integrated care. AIM: To review and appraise the existing evidence about the integration of palliative care in burn intensive care units with respect to (1) the concept, model and design and (2) the benefits and outcomes of this integration. DESIGN: A systematic review was conducted following PRISMA guidelines. Protocol registered with PROSPERO (CRD42018111676). DATA SOURCES: Five electronic databases were searched (PubMed/NLM, Web of Science, MEDLINE/TR, Ovid, and CINAHL/EBSCO) until May 2019. A narrative synthesis of the findings was constructed. Hawker et al.'s tool was used for quality appraisal. RESULTS: A total of 299 articles were identified, of which five were included for analysis involving a total of 7353 individuals. Findings suggest that there may be benefits from integrating palliative care in burn units, specifically in terms of patients' comfort, decision-making processes, and family care. Multidisciplinary teams may experience lower levels of burden as result of integrating palliative care in burn units. CONCLUSION: This review reflects the challenging setting of burn intensive care units. Evidence from these articles suggests that the integration of palliative care in burn intensive care units improves patients' comfort, decision-making process, and family care. Further research is needed to better understand how the integration of palliative care in burn intensive care units may be fostered and to identify the outcomes of this integration.


Subject(s)
Burns/therapy , Critical Care/methods , Delivery of Health Care, Integrated/organization & administration , Palliative Care/organization & administration , Critical Care/psychology , Decision Making , Family/psychology , Humans , Palliative Care/psychology , Quality of Life
11.
Ann Palliat Med ; 7(Suppl 3): S207-S218, 2018 Oct.
Article in English | MEDLINE | ID: mdl-30180733

ABSTRACT

Several outcome measures have been systematically implemented to be used in palliative care. However, routine use in clinical practice is not without ethical challenges, which are not commonly addressed. The objectives of this study are therefore (I) to identify the ethical challenges/issues of outcome measurement in palliative care and (II) to understand how these ethical challenges/issues are addressed in palliative care clinical practice. The study consisted of a systematic review of systematic reviews, which is a type of review that brings together a summary of reviews in one place. We searched PubMed, Web of Science, EBSCOhost searching CINAHL Complete, MEDLINE Complete, Nursing & Allied Health Collection: Comprehensive, Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews, Cochrane Methodology Register, Library, Information Science & Technology Abstracts, MedicLatina, from inception to January 2018. Out of 159 articles screened, only two [2] articles were included for analysis. The main ethical challenge/issue identified in these two reviews was cognitive impairment, particularly in patients with dementia. This challenge was addressed via proxy (family carers or health professionals) reporting outcome measurement. Ethical challenges/issues are poorly addressed in the existing systematic reviews about outcome measurement in palliative care clinical practice. Only two systematic reviews addressed ethical challenges/issues, namely cognitive impairment, particularly in persons with dementia. Further research is needed on this subject and to foster the use of outcome measurement among this vulnerable group of patients.


Subject(s)
Outcome Assessment, Health Care/ethics , Palliative Care/ethics , Humans , Systematic Reviews as Topic
12.
BMC Palliat Care ; 17(1): 89, 2018 Jun 29.
Article in English | MEDLINE | ID: mdl-29958534

ABSTRACT

BACKGROUND: Education sessions about palliative care among teenagers are uncommon in developed countries. However, very little is known either about the impact of this type of intervention or about how this age-group perceives its impact. The purpose of this study was therefore to (i) implement an education program about palliative care among teenagers and (ii) to investigate the impact of the program on the participants. METHODS: An action-research study was conducted at a local community parish in Portugal in November 2015. An education programme was purposively built about palliative care, using active educational strategies adapted for teenagers. Quantitative and qualitative techniques and instruments were used for data collection: questionnaire; reflective diaries; interviews and written testimony. The program had three stages: preparation; intervention; and evaluation. Qualitative data were analysed using thematic content analysis; quantitative data were analysed descriptively. RESULTS: 69 people (47 teenagers) participated in the education program. Findings show that the education program contributed to creating awareness about palliative care. Both the teenagers and other participants assessed the education program positively. At the end of the program, teenagers had a constructive message about palliative care. CONCLUSIONS: The education-intervention contributed to create awareness about palliative care among the participant teenagers, who ended the program with a positive message about palliative care. Based on our findings, the following policy implications can be drawn: (1) Further research is needed to evaluate the effect of education programs about palliative care among younger age groups (teenagers and children), particularly in relation to the changing of attitudes toward palliative care. (2) Education about palliative care should be promoted to local communities, involving all age groups, to foster involvement, participation and empowerment. (3) Compassionate communities should be promoted to enhance the health and wellbeing of all citizens at the end of their life.


Subject(s)
Health Promotion/methods , Palliative Care/methods , Public Health/methods , Adolescent , Adolescent Behavior/psychology , Community Participation/methods , Developing Countries , Female , Health Promotion/standards , Health Services Research , Humans , Male , Portugal , Public Health/education , Qualitative Research , Surveys and Questionnaires
13.
Acta bioeth ; 24(1): 47-56, jun. 2018.
Article in English | LILACS | ID: biblio-949307

ABSTRACT

Abstract: 16. There has been a shift in the language of responsibility because the threat of malpractice litigation is encouraging physicians to assume a more responsible role in caring for their patients. Consequently, instead of paying attention to the moral dimension of this principle, professionals are sometimes much more concerned about legal repercussions. This article aims therefore at analyzing the recent literature on responsibility in intensive care, focusing on its ethical dimension. By analyzing the contributions of Emmanuel Levinas, Hans Jonas and Paul Ricoeur, who placed special emphasis on the theme of "moral responsibility", we will attempt to shed some light on this ethical principle within the specific context of Intensive Care Medicine. This paper underlines the importance of responsibility in order to draw attention to the need to establish an appropriate balance between autonomy and self/other-oriented responsibilities. A tridimensional approach is suggested to frame responsibility within the context of intensive care.


Resumen: 20. Ha habido un cambio en el lenguaje sobre la responsabilidad, debido a que la amenaza de demandas por mala práctica fuerza a los médicos a asumir un rol más responsable en el cuidado de sus pacientes. Por consiguiente, en lugar de prestar atención a la dimensión moral de este principio, muchas veces los profesionales están más preocupados de las repercusiones legales. Este artículo tiene como objetivo analizar la bibliografía reciente sobre responsabilidad en cuidados intensivos, enfocándose en la dimensión ética. Al analizar las contribuciones de Emmanuel Levinas, Han Jonas y Paul Ricoeur, que pusieron especial énfasis en el tema de la "responsabilidad moral", tratamos de iluminar este principio ético en el contexto de la Medicina del Cuidado Intensivo. Este trabajo enfatiza la importancia de en dirigir la atención a la necesidad de establecer un balance apropiado entre la autonomía y las responsabilidades orientadas hacia uno mismo o hacia el otro. Se sugiere una aproximación tridimensional para enmarcar la responsabilidad en el contexto del cuidado intensivo.


Resumo: 25. Tem havido uma mudança na linguagem da responsabilidade uma vez que a ameaça de litígio por imperícia está incentivando os médicos a assumir um papel mais responsável no cuidado de seus pacientes. Por conseguinte, em vez de prestar atenção à dimensão moral deste princípio, os profissionais algumas vezes estão muito mais preocupados com as repercussões legais. Portanto, este artigo visa analisar a literatura recente sobre responsabilidade nos cuidados intensivos, com foco em sua dimensão ética. Analisando as contribuições de Emmanuel Levinas, Hans Jonas e Paul Ricoeur, que deram ênfase especial sobre o tema da "responsabilidade moral", vamos tentar lançar alguma luz sobre este princípio ético dentro do contexto específico da medicina de cuidado intensivo. Este artigo sublinha a importância da responsabilidade a fim de chamar a atenção para a necessidade de estabelecer um equilíbrio adequado entre a autonomia e responsabilidades orientadas para si e para o outro. Sugere-se uma abordagem tridimensional para enquadrar a responsabilidade para dentro do contexto de cuidados intensivos.


Subject(s)
Humans , Physician-Patient Relations , Critical Care/ethics , Ethics, Professional , Intensive Care Units/ethics , Terminal Care , Personal Autonomy , Decision Making , Interpersonal Relations
14.
J Palliat Med ; 21(5): 604-615, 2018 05.
Article in English | MEDLINE | ID: mdl-29742044

ABSTRACT

BACKGROUND: End-of-life decisions (ELDs) are embedded in clinical, sociocultural, political, economic, and ethical concerns. In 2014, the Council of Europe (CoE) through its Committee on Bioethics launched the "Guide on the decision-making process regarding medical treatment in end-of-life situations," aiming at improving decision-making processes and empowering professionals in making ELDs. OBJECTIVE: To analyze if end-of-life decision making in palliative care (PC) is consistent with this Guide and to identify if disputed/controversial issues are part of current ELDs. DESIGN: Qualitative secondary analysis. SETTING/SUBJECTS: Four qualitative datasets, including 44 interviews and 9 team observation field notes from previous studies with PC teams/professionals in Portugal. MEASUREMENTS: An analysis grid based on the abovementioned guide was created considering three dimensions: ethical and legal frameworks, decision-making process, and disputed/controversial issues. RESULTS: The majority of the professionals considered the ethical principle of autonomy paramount in end-of-life decision making. Justice and beneficence/nonmaleficence were also valued. Although not mentioned in the Guide, the professionals also considered other ethical principles when making ELDs, namely, responsibility, integrity, and dignity. Most of the interviewees and field notes referred to the collective interprofessional dimension of the decision-making process. Palliative sedation and the wish to hasten death were the most mentioned disputed/controversial issues. The nature, limitations, and benefits of qualitative secondary analysis are discussed. CONCLUSIONS: End-of-life decision-making processes made by Portuguese PC teams seem to be consistent with the guidelines of the CoE. Further research is needed about disputed/controversial issues and the actual use, effectiveness, and impact of ethical guidelines for end-of-life decision making on professionals' empowerment and for all parties involved.


Subject(s)
Decision Making/ethics , Health Personnel/psychology , Hospice and Palliative Care Nursing/ethics , Hospice and Palliative Care Nursing/standards , Practice Guidelines as Topic , Terminal Care/ethics , Terminal Care/standards , Adult , Attitude of Health Personnel , Ethics, Medical , Female , Humans , Male , Middle Aged , Portugal
15.
J Pain Res ; 11: 967-976, 2018.
Article in English | MEDLINE | ID: mdl-29844699

ABSTRACT

INTRODUCTION: The practice and study of pain management pose myriad ethical challenges. There is a consensual opinion that adequate management of pain is a medical obligation rooted in classical Greek practice. However, there is evidence that patients often suffer from uncontrolled and unnecessary pain. This is inconsistent with the leges artis, and its practical implications merit a bioethical analysis. Several factors have been identified as causes of uncontrolled and unnecessary pain, which deprive patients from receiving appropriate treatments that theoretically they have the right to access. Important factors include (with considerable regional, financial, and cultural differences) the following: 1) failure to identify pain as a priority in patient care; 2) failure to establish an adequate physician-patient relationship; 3) insufficient knowledge regarding adequate prescription of analgesics; 4) conflicting notions associated with drug-induced risk of tolerance and fear of addiction; 5) concerns regarding "last-ditch" treatments of severe pain; and 6) failure to be accountable and equitable. OBJECTIVE: The aim of this article was to establish that bioethics can serve as a framework for addressing these challenging issues and, from theoretical to practical approaches, bioethical reflection can contextualize the problem of unrelieved pain. METHODS: This article is organized into three parts. First, we illustrate that pain management and its undertreatment are indeed ethical issues. The second part describes possible ethical frameworks that can be combined and integrated to better define the ethical issues in pain management. Finally, we discuss possible directions forward to improve ethical decision making in pain management. DISCUSSION: We argue that 1) the treatment of pain is an ethical obligation, 2) health science schools, especially medical training institutions, have the duty to teach pain management in a comprehensive fashion, and 3) regulatory measures, which prevent patients from access to opioid treatment as indicated in their cases, are unethical and should be reconsidered. CONCLUSION: Developing an ethical framework for pain management will result in enhanced quality of care, linking the epistemic domains of pain management to their anthropological foundations, thereby making them ethically sound.

16.
J Int Med Res ; 45(6): 1787-1793, 2017 Dec.
Article in English | MEDLINE | ID: mdl-28459355

ABSTRACT

Introduction Antimicrobial resistance (AMR) is a challenging global and public health issue, raising bioethical challenges, considerations and strategies. Objectives This research protocol presents a conceptual model leading to formulating an empirically based bioethics framework for antibiotic use, AMR and designing ethically robust strategies to protect human health. Methods Mixed methods research will be used and operationalized into five substudies. The bioethical framework will encompass and integrate two theoretical models: global bioethics and ethical decision-making. Results Being a study protocol, this article reports on planned and ongoing research. Conclusions Based on data collection, future findings and using a comprehensive, integrative, evidence-based approach, a step-by-step bioethical framework will be developed for (i) responsible use of antibiotics in healthcare and (ii) design of strategies to decrease AMR. This will entail the analysis and interpretation of approaches from several bioethical theories, including deontological and consequentialist approaches, and the implications of uncertainty to these approaches.


Subject(s)
Anti-Bacterial Agents/pharmacology , Bioethics , Drug Resistance, Bacterial/drug effects , Empirical Research , Public Health/ethics , Research Design , Humans
17.
PLoS One ; 11(9): e0162340, 2016.
Article in English | MEDLINE | ID: mdl-27612293

ABSTRACT

INTRODUCTION: Professionals working in intensive and palliative care units, hence caring for patients at the end-of-life, are at risk of developing burnout. Workplace conditions are determinant factors to develop this syndrome among professionals providing end-of-life care. OBJECTIVES: To identify and compare burnout levels between professionals working in intensive and palliative care units; and to assess which workplace experiences are associated with burnout. METHODS: A nationwide, multicentre quantitative comparative survey study was conducted in Portugal using the following instruments: Maslach Burnout Inventory-Human Services Survey, Questionnaire of workplace experiences and ethical decisions, and Questionnaire of socio-demographic and professional characteristics. A total of 355 professionals from 10 intensive care and 9 palliative care units participated in the survey. A series of univariate and multivariate logistic regression analyses were performed; odds ratio sidelong with 95% confidence intervals were calculated. RESULTS: 27% of the professionals exhibited burnout. This was more frequent in intensive care units (OR = 2.525, 95% CI: 1.025-6.221, p = .006). Univariate regression analyses showed that higher burnout levels were significantly associated with conflicts, decisions to withhold/withdraw treatment, and implementing palliative sedation. When controlling for socio-demographic and educational characteristics, and setting (intensive care units versus palliative care units), higher burnout levels were significantly and positively associated with experiencing conflicts in the workplace. Having post-graduate education in intensive/palliative care was significantly but inversely associated to higher burnout levels. CONCLUSIONS: Compared to palliative care, working in intensive care units more than doubled the likelihood of exhibiting burnout. Experiencing conflicts (e.g., with patients and/or families, intra and/or inter-teams) was the most significant determinant of burnout and having post-graduate education in intensive/palliative care protected professionals from developing this syndrome. This highlights the need for promoting empowering workplace conditions, such as team empowerment and conflict management. Moreover, findings suggest the need for implementing quality improvement strategies and organizational redesign strategies aimed at integrating the philosophy, principles and practices of palliative care in intensive care units.


Subject(s)
Burnout, Professional/psychology , Critical Care/psychology , Health Personnel/psychology , Palliative Care/psychology , Adult , Female , Humans , Intensive Care Units , Male , Portugal , Surveys and Questionnaires
19.
Palliat Med ; 30(9): 884-8, 2016 10.
Article in English | MEDLINE | ID: mdl-26994120

ABSTRACT

BACKGROUND: Making palliative care accessible to all citizens who are in need of this type of care requires effective policies and education. Moreover, healthcare professionals have an ethical and legal responsibility to ensure quality palliative care. Nevertheless, palliative care has had traditionally a limited emphasis in healthcare professionals' undergraduate education. AIM: To study the current status of palliative care education in nursing undergraduate curricula and compare 2005 and 2015 findings. DESIGN: An online survey was sent to all state schools providing nursing undergraduate education in Portugal (N = 21). The survey assessed if and how palliative care was included in the curricula, and whether or not national and international recommendations for palliative care nursing education were followed. Further analysis included the content of available curricula/syllabi. SETTING/PARTICIPANTS: A total of 19 schools completed the survey (90% of response rate). These institutions are geographically dispersed and representative of state nursing educational institutions in Portugal. RESULTS: In 2015, all participant schools integrated palliative care in their curricula; nine schools had palliative care as an independent curricular unit (an 800% increase compared to 2005). While in 2005, only 14 out of 23 (61%) schools included palliative care explicitly in their curricula; in 2015, all 19 participant schools did so. National and international recommendations were followed. CONCLUSION: The inclusion of palliative care within nursing undergraduate curricula strongly increased from 2005 to 2015. Further research is needed to understand the contribution of education in the access, care provision, quality and development of palliative care in this country.


Subject(s)
Curriculum , Hospice and Palliative Care Nursing/education , Education, Nursing , Humans , Palliative Care , Portugal , Surveys and Questionnaires
20.
J Med Ethics ; 41(9): 766-70, 2015 Sep.
Article in English | MEDLINE | ID: mdl-25896928

ABSTRACT

BACKGROUND: The ageing of the population raises the need to study forgoing treatment decisions among older people. AIM: To describe the incidence and decision-making of forgoing treatment and identify age-related differences. METHODS: A nationwide study of a stratified sample from the Statistics Netherlands death registry to which all deaths were reported in 2010. All attending physicians of those deaths received a questionnaire about end-of-life decisions. 6600 cases were studied. We examined three age groups: 17-64, 65-79, and 80 and above. Logistic regression analyses were performed to identify age-related differences controlling for other patient characteristics. RESULTS: Forgoing treatment occurred in 37% of the total population, with a significant increase in the incidence across age. The most common treatments withheld/withdrawn were artificial hydration/nutrition, medication and antibiotics. Age-related differences were found, especially for withholding artificial hydration/nutrition among patients aged 65-79 (OR 2.04), and for withdrawing medication (OR 2.51) and antibiotics (OR 2.10) among the oldest when compared to the youngest patients. The most common reason for making the decision was 'no chance of improvement'. The likelihood of forgoing treatment due to 'loss of dignity' was higher for the oldest (OR 2.32), as well as due to the request/wish of the patient (OR 1.97), when compared to the youngest patients. CONCLUSIONS: Forgoing treatment occurred in a substantial proportion of older people, and more often than in younger age groups. The avoidance of burdensome treatment solely to prolong life suggests a better acceptance that these patients are nearing death.


Subject(s)
Choice Behavior , Life Support Care , Mortality/trends , Palliative Care , Personal Autonomy , Terminally Ill , Treatment Refusal , Adolescent , Adult , Age Factors , Aged , Aged, 80 and over , Decision Making , Female , Humans , Logistic Models , Male , Middle Aged , Netherlands/epidemiology , Registries , Retrospective Studies , Surveys and Questionnaires
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